Just when things slow down a bit, a huge, undetected storm arises…
So, this morning Noah, who hadn’t pooped in a week, literally emptied the contents of his digestive tract every which way…His fever had been creeping last night, like I said, but late this morning, his bed was filled with diarrhea and he had brown stuff coming out his nose. Well, his little colon twists and turns and is distended because of all of this. Yesterday I told the nurses I wanted to give his body a break and stop his continuous feeds at least 3 times a day for an hour or so since his output wasn’t matching his input. They thought it was a good idea, but today he went ahead and figured that out for all of us. The nurse hooked up a drain to his g-tube (mickey button in his tummy we haven’t used in 2 months…) and has gotten out 450cc of dark brown fluids!!! Noah had to have several x-rays today to determine if he’s aspirated any of the stomach contents that came out his nose. HE HAD NOT! Then, they were checking to see if he had a blockage in his digestive tract, WHICH HE DID NOT! So, they did a lot of blood draws, urine samples, stool samples, trach/mucus samples which are all still at the lab. They are doing another one here soon to check his renal function because he had blood in his urine…His white blood cell count is high, so there is an infection brewing. He is on a round of some pretty big dog drugs, but at our request, and I’ll tell you why…
SO, the diarrhea issue with Noah has always bothered me. He’s had it for 5 stinking months now! The GI doc only came to check Noah out after two months in the PICU at our request, and even then, she stuck her pinky in his hiney and he pooped and she said, “he has good response”…so, anyway, Monday the ethics nurse who headed up our meeting came to see if we’d compile a list of therapies and treatments we wanted to try on Noah. Monday I was thinking I’d like a full stool screen, more in depth than anything they’ve ever done, to be priority on the list, along with a GI consult and let’s bring the ID (Infectious Disease) guys back on board. Then on Tuesday I started doing research online about chronic diarrhea and dysentery came up, so I did a search on that and there are two kinds, bacterial and amoebic dysentery. Bacterial runs its course and rectifies itself (kind of like “Montezuma’s revenge” in Mexico). Amoebic may not show up immediately but then runs its course thru the intestines but then penetrates the colon wall if untreated and travels to the brain. It is fatal in infants and the elderly if it goes un or mis-diagnosed. I found it very interesting…Then, yesterday the RT came to do Noah’s treatments and took one look at his rash and said, “WOW! I started getting rashes like that in Vietnam! I still cycle them but not as bad as this!” I asked him what he had contracted in Nam and he said dengue fever, trench fever, some other crazy bug I can’t recall and amoebic dysentery…Last night the neurosurgeon that came to talk to us said that he had that one unsolved case of the kid with the brain biopsy that showed he had an amoeba. I asked the doctor if there was any other indicator that would show the presence of an amoeba in Noah, like using his many samples; ie muscle, skin, or nerve biopsy or his two spinal taps…he said no, that even the kid with the amoeba had a normal spinal tap (Noah’s were “normal”), except he had elevated eosinophils in his blood. I told him that Noah has had elevated eosinophils off and on for 4 months and no one has addressed it. I finally did some research one night from all his CBC’s (blood labs) and found that eosinophils are markers for parasites and allergens in the blood. The docs have all assured me that Noah’s too young to have allergies…
SOOOOO, last night on the way home while I was praying about the whole brain biopsy thing, it occurred to me that the hospital doesn’t think he has a fungus, but they are treating him with an anti-fungal at our request (he was still spiking temps on anti-biotics so we thought it could be a fungus – plus he has antigens on his blood for Aspergillus, a fungus), SO, why not try anti-amoebic drugs to see if they’d do anything because if it did, then they wouldn’t need a brain biopsy! Well, this morning when Noah had an all out colon blow, I told Jason to TELL the docs that we want an anti-amoebic dysentery regimen started on Noah 10 minutes ago. They started it and he is now on Flagyl, Gentomyacin, and Vancomyacin. I called our doc in Aspen who has been doing research for Noah for 3 months now, helping us find the outside labs that have revealed the antigens for Borrelia burgdorferi and Aspergillus in his blood, and he said that Flagyl is the drug they use to attack Bb in its cystic form (when it’s taken up “residency”). SO, amoeba or Bb, Noah is getting a pretty good dose of drugs to kill off the guys, if they are there. I know it may seem experimental to some, and unscientific to the meds out there, but in the ethics meeting of 35 plus people we determined we were beyond sitting around trying to find a diagnosis before treatment, so, I’m willing to take the risk of seeing if these drugs help Noah since we have to wait for at least 2 weeks before we’d get a brain biopsy anyway!
So, that’s all that happened today…no excitement here!!!!
Holy cow Adrienne! I feel a sense of excitement about this, that you may definitely be onto something through God’s leading you. Praise God! Keep us posted.
Love you guys,
I can’t imagine what you guys are going through. I check your website several times a day and pray even more often. Noah has many angels watching over him, and I pray that some how there will be a happy ending to all of this. Ann
I agree with what was said before- it’s kinda like a lightbulb moment… that’s huge Adrienne! I pray that it is “it” and that you are on the road to recovery soon… i’ll email later – but my son had a miraculous healing TODAY!! unbelieveable.. my faith is renewed…
I don’t think I’ve been this excited in a long time. I read about Noah every day and have been praying for him. Right now I’m praying, praying, praying that this is the breakthrough you need to get Noah treatment and have him chasing Emily in no time!
I introduced Noah to my son tonight. He is 6. He asked if the pictures were of Noah’s home. I explained he was in the hospital. He says, “Noah needs to go home”. So, we went and prayed for Noah and your family. Your family has touched our lives in more ways than can be described in words. Thank you! Our prayers are with you everyday.
Praise God for your persistence!!! Please God let this be the breakthrough that will answer so many questions.
Praying, praying, praying!
I really feel like you guys are on the right track. Keep up the faith!
This sounds like an episode off of House! You could teach the medical profession a thing or two about commitment, sounds to me like YOU should be practicing medicine! Praise God for continuing to sustain little Noah’s life!!! Keep following His leading Adrienne. I’ll second it, I think you’re on to something!!!! AMEN!!!
Amazing, amazing, amazing. I don’t even know you but you contine to amaze me. You all are doing great – keep it up. We’re all behind you!
-AM in OK
Your little guy (and your little gal) are sure as heck lucky to have such an amazing, beautiful, intelligent mommy (and daddy too)!!
let me just say how proud i am of you and jason for being such strong advocates for noah – for your fighting spirits – for your submission to the Lord … and thankful with you for the Lord’s leading along the way.
i can’t help but feel a bit of excitement and hope… i am SO with you on this treatment before diagnosis at this point… you have MY utter support. 😉 at this point you are likely in a mode of deperation and time is of the essence.. this seems like an incredibly good move to me. may the Lord continue to heal, lead, and cover you withHis love.